• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Can 50 Mg Of Dapsone Really Make Me Feel This Way?
0

Rate this topic

16 posts in this topic

Recommended Posts

I posted on an old thread but I think I need to start a new one. 

 

I just thought about it yesterday that I think the Dapsone that I am taking (only 50 mg/day) is really affecting me. I was expecting nasea and so when I didnt feel that way I figured I wasnt experiencing any side effects. Well, I am feeling more and more crappy as the time goes on. I have only been on it for 11 days but am feeling like I am walking around in a fog, extremely tired within 1/2 hour of taking it and my muscles feel like they are so weak. I almost feel like you would would feel if you had a bad flu.

 

My questions are these:

 

Does anyone else relate to these symptoms?

 

Should I quit taking it or maybe try taking it at night instead of the morning? 

 

Can the symptoms get worse over time? (even though I have only been on it for less than 2 weeks-these feelings have been the last 3 days which also correlates with starting back up on gluten incase I need a skin retest)

 

*At first I thought it was from going back on gluten but today I made sure I only ate a banana and an egg when I took my dose of dapsone and I still feel this way...I start to feel like head is clear around dinner time.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I agree with Prickly. You need to contact your doc ASAP. Dapsone is not something you play around with. You may be one of those who can not tolerate it. There have been quite a number who have tried it but had too severe of side effects to be able to continue with it. Or maybe your dosage just needs to be lowered. But I would let your doc know right away! Dapsone can do some awful things and it can do some great things but awful is not an option. It can cause severe anemia.

Share this post


Link to post
Share on other sites

THanks for the reply's. I am not going to take it until I see my doctor again which is tuesday. I am definately feeling weird, even after 12 hours although I am up and around now. I cant get in very easily to my doctor so is Tuesday fine? Or is this something I should be trying to get in right away? 

 

Share this post


Link to post
Share on other sites

Just stop taking it and see what happens. That's what the doc will tell you to do, most likely. Probably some blood work.

When I've had reactions to meds they always say stop taking it, not much after that. In this case if the symptoms go away after you stop at least you'll know the dapsone is doing it and can ask for alternatives.

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


yes I have stopped. Still feel really shaky and weak.I had to turn the heat down as I feel overheated or something too. Just all around yuck!  I am at work today so hopefully I can just work through it as I am a middle school teacher! No time to slow down here! 

Share this post


Link to post
Share on other sites

yes I have stopped. Still feel really shaky and weak.I had to turn the heat down as I feel overheated or something too. Just all around yuck!  I am at work today so hopefully I can just work through it as I am a middle school teacher! No time to slow down here! 

Share this post


Link to post
Share on other sites


Ads by Google:


Once again, I agree with Prickly.

Share this post


Link to post
Share on other sites

Well, I contemplated trying to get into see my dr today after work as I was still feeling very weak, muscles were tired and then my pee turned really dark (that actually started last night but I paid more attention today). Towards the end of the day though, I started to feel a little better and managed to actually have energy for the afternoon of my work day. I am hoping its starting to leave my system (was taken at 8 am sunday). I am assuming, though, that  I will likely be getting more blood work tomorrow. 

Share this post


Link to post
Share on other sites

Well, I contemplated trying to get into see my dr today after work as I was still feeling very weak, muscles were tired and then my pee turned really dark (that actually started last night but I paid more attention today). Towards the end of the day though, I started to feel a little better and managed to actually have energy for the afternoon of my work day. I am hoping its starting to leave my system (was taken at 8 am sunday). I am assuming, though, that  I will likely be getting more blood work tomorrow. 

 

I just signed in and saw your question.  You should have called your doctor ASAP or gone to the ER.

 

You are describing exactly what my PCP told me could be a severe reaction to Dapsone from the aches, sore throat, weakness to the dark yellow urine.  Your kidneys, liver and acute anemia are what they monitor on me, every month.  I sure hope that you did see your doctor and are ok.

 

I am fortunate that Dapsone works for me without ill effects.  Just this week, all my blood and urine tests are good.  

 

Please let us know how you are. . . 

Share this post


Link to post
Share on other sites


Ads by Google:


The dark urine is kind of scary.  I would definitely have stopped taking it at that point.  I've tried twice to take Dapsone at 50mg dose and just couldn't keep at it for more that 10 days because I felt like such crap.  It was slightly better the second time, but it really boiled down to not being able to tolerate exercise (which is a big part of my life).

 

I hope you are well.

Share this post


Link to post
Share on other sites

I just signed in and saw your question.  You should have called your doctor ASAP or gone to the ER.

 

You are describing exactly what my PCP told me could be a severe reaction to Dapsone from the aches, sore throat, weakness to the dark yellow urine.  Your kidneys, liver and acute anemia are what they monitor on me, every month.  I sure hope that you did see your doctor and are ok.

 

I am fortunate that Dapsone works for me without ill effects.  Just this week, all my blood and urine tests are good.  

 

Please let us know how you are. . . 

I did go back to the doctor on tuesday, 2 days after I went off of dapsone. By the time I went to my doctor I was feeling better but it did take quite a while to get out of my system. In fact, up until yesterday, I was still unusually tired. She didn't seem too concerned especially because I was feeling better after coming off of the drug. The dark urine actually started after my final dose and after I had decided that things were not going well! 

 

It turned out, as well, that the doc didnt do the swab correctly so she only tested for some other skin things. Now, I am waiting on a dermatologist appointment but in the mean time I am taking the dapsone 5% topical. I hope the side effects don't go into my system the way they did last time. So far, so good. I think. 

Share this post


Link to post
Share on other sites

I would be very interested in hearing how the Dapsone topical does for you in all respects. That might be something I could do myself. Please keep us updated on how that does okay?

Thanks

Share this post


Link to post
Share on other sites

Glad that you are better!  My PCP would have done blood and urine tests stat, I know.  I already had anemia, low iron, etc. so she watches me closely.  Good news for me is that my April stats are good, with blood and iron back to normal.  Yipee!  

 

I think the topical would be great and have considered asking if I can switch. . . . let us know how it works for you.   :)

Share this post


Link to post
Share on other sites

well, so far I am not seeing any side effects from the topical dapsone so that is good news. As far as the working factor, it is hard to tell becuase it does seem better but then I am always wondering if I am imagining things in hopes that they are working! It still has itchy times but again, like the oral dapsone, the itch seems less intense. I will let you know in a few more days.

Share this post


Link to post
Share on other sites


Ads by Google:


So, 4 or so days on dapsone topical and then now I have misplaced it! I haven't had any since yesterday AM and my legs are on fire tonight! It was definately helping. Actually, even more than I thought until I was off for 24 hours. New breakouts happening tonight. So frustrating. I have 4 kids and have a feeling that one of them either grabbed it to look at or cleaned up an area and moved it! I have been looking all evening for it. 

 

On a good note, I got my referral already for a dermatologist who will hopefully do a DH skin test properly! That is on May 6th. 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,148
    • Total Posts
      939,938
  • Member Statistics

    • Total Members
      66,137
    • Most Online
      3,093

    Newest Member
    Isthmus123
    Joined
  • Popular Now

  • Topics

  • Posts

    • Yeah I can not drink but as a chef the culinary uses for liquors, wines, and beer/ciders is amazing. Yeah I was thinking the same thing with the orange one using it in wither crock pot a bunch of chicken breast in, marinade them in prior to cooking is another thought. The apple one, I was thinking of doing a roast in it. you know how some people crock pot a roast in dr. pepper, root beer, or actual beer? I was thinking of doing a shoulder roast, or a boston butt in austin apple cider with some bacon and a bit of maplehoney in the pot along with half a sweet onion in there. Cook it say 8 hours, then drain it out and shred it then serve up with some sauce or plain depending on finished flavor. Thinking this would be nice to serve up with my bread for sandwiches, by itself, or perhaps over some chips. I also have this idea of using it to make a turkey or ham gravy, 8oz, simmer it down with trimmings and drippings from the holiday turkey/ham, the onion we cook in the pan with it chopped, 3 chopped roma tomatoes,  bay leaf, stir it with a rosemary twig, crush it all up with the back of the ladle,  then strain it out and pour in a gravy bowl with some chopped toasted walnuts in the bottom to be served with the dressing, and potatoes at new years for the family....Basing this on what I did last year with a dry sherry, but replacing it with the cider.
    • Austin's  are good ciders!   I have good luck using regular ( non- alcoholic) cider, especially for pork  roasts and pork chops!   but they do leave a bit of an Apple taste.  I think Austins has a dry cider?  That is less sweet, more beer- like.   They also have an interesting orange flavored one.  Might be good for chicken dishes.  The pineapple didn't taste very pineapples to me.
    • No milk in my diet. I don’t consume the major allergens. 
    • Thanks for the info. Great for folks that don't have a local source.  I found a place to get a good deal on both the big bag of jelly beans and licorice at my local Tractor Supply for 3 bucks each. Right now I am eating a 16 oz bag of their Bumble Beans that I got a Big Lots for $1.50. Those and Dark Chocolate baking chips are my worst food addictions.
    • Used some nice hard cider for a sub in beer can chicken last month for a cookout I was doing. I have been debating using it in place of beer in some marinades, baked goods, or roast that are cooked in a beer. I hear good reviews on them and I keep thinking the ciders might work I know I hear of people using AceCiders but I have not seen them. I used the following ones so far and only the apple. https://austineastciders.com/
  • Upcoming Events